Anger mounts in black community over threat to Brent Sickle Cell project

For readers unfamiliar with the impact of sickle cell this video provides some background

There have been a number of angry reactions to Nan Tewari's guest blog LINK about the threatened cut to the funding of the Brent Sickle Cell project which highlighted the threat itself and the failure to adequately consult with the populations most affected in Stonebridge and Harlesden wards.

The decision of the Brent Clinical Commissing Group to hold a consultation meeting at an inconvenient time in Wembley Park drew this response:

The decision to hold the meeting away from Harlesden and Stonebridge is a deliberate and cynical act of tokenism by Brent CCG and renders the meeting as merely a 'paper exercise'. Why is Brent CCG treating this vulnerable group of patients in such a dismissive way?

It would appear that Brent CCG is increasingly showing itself to be incapable of performing it's functions with any degree of competence.

Time it was held up to public scrutiny.

One comment asked bluntly if it was 'because we are black?'

Nan herself put it in the context of the treatment of residents in Harlesden and Stonebridge and the perceived lack of action by local councillors.

As if it weren't bad enough that the Central Mid A & E was closed down.....

As if it weren't bad enough that sickle cell treatment was moved to Northwick Park, 2 buses away......

As if it weren't bad enough the Harlesden population lives a decade less than others in Brent......

I suppose after closing down the Stonebridge adventure playground, Brent's councillors are too embarrassed to take Brent CCG to task over this - if indeed the sleepy councillors can even be bothered about it - after all, Harlesden and Stonebridge are pretty much captive voters for them.

Leroy Decosta Simpson, Harlesden activist said that he would would like to see the paperwork and get his 'big bwoys' to look into it.

Philip Grant in his usual meticulous way looked at the documentation and wrote:

The report that went to the CCG's Governing Body on 6 July includes the following important paragraph:

'Overall the service is seen by service users as a valued and forward thinking service model that supports the management of this long term condition, in an area of particularly high prevalence. However, the agreed Key Performance Indicators (KPIs) demonstrate a level of performance that requires improving. The service provider has cited a number of operational issues which has adversely impacted on performance and delivery of the KPIs.'

The first sentence confirms that the project, which had only been running for a year, was already providing a very valuable and worthwhile service to the people who needed it most.

The second sentence refers to the failure to meet some of the "Key Performance Indicators", showing that the service needed to be improved, while the third sentence shows that there were reasons to show why these KPI's had not been met in the first year.

Given the positive impact of providing the service in its "start-up" year, it is difficult to understand why it was not given at least another year to make the improvements that were needed. Instead, the CCG's Executive recommended, and the Governing Body accepted, the following option:

'Not to extend the pilot but explore alternative sustainable models for care for example a peer support model with Brent Council or the use of the PAM tool can be explored to support this cohort of patients.'

It appears that the CCG wants to pass some of its own responsibility for (and cost of) the care of sickle cell sufferers onto Brent Council, whose services are already stretched, without consulting with or considering the needs of 'this cohort of patients'.

Nan Tewari, referring to the last paragraph, responded:

A fellow patient rep who attended the CCG meeting said afterwards, that the Brent Council public Health rep on the Governing Body said flatly that the council had no money to support a project.

This issue, which disproportionately affects Brent's Black Caribbean and Black African population, is one that could cause massive disaffection.  The CCG's decision needs to be reviewed, proper consultation put in place and an independent Equalities Impact Assessment carried out.

Incidence of sickle cell trait is approximately 1 in 4 West Africans and 1 in 10  Black Caribbean.

The Brent Patient Voice submission to the CCG can be found HERE

The Brent CCG Governing Body papers can be found HERE